EOP DREAM

Love,  mommy

I am so proud of my little Eden and her strength of character.  She has taught me, among other things, the principle of enduring with patience and a positive attitude.   Despite everything that is thrown at her, she is still a content, peaceful baby.  I definitely need to moan and groan a little less and count my blessings more.  I have become more at peace with the next surgery because I know that we can't count Eden out just because it's a high risk procedure.  She hasn't let anything get the best of her yet, so why would she start giving up now.  If only I had as much determination as she does to conquer life's challenges.

Let me give you a little background for this week in our family.  As you all know, after Friday's cath we were all under the impression that Eden would be having surgery this Friday.  I didn't say anything, but it's not a good weekend for us because my sister is getting married on Saturday and we have so many family and friends coming into town for the wedding.  What a damper that would have put on the wedding festivities.  However, we were going to go with whatever day they told us as we will do what is best for Eden over anything else.

Little Eden must have known what was happening this weekend and that surgery just wasn't a good idea so she "took one for the team!"  Eden came down with an infection in her new Broviac line and just starting a course of antibiotics yesterday.  Her doctors informed this morning that she ill not have surgery this week for sure and we are now looking at the end of next week at the soonest.  They want to have her infection completely healed before they re-open her.  I called my mom and sister right away and told them to thank Eden for being such a team player!  We know this infection isn't a good thing, but we are looking at the positives surrounding it.  She has been negative (peeing more than she is taking in) for the last two days and not just a little, but in the 200's and that is substantial.  It will take a number of days of being negative for her to lose all of the fluid, but we are hopeful now.  This can only put her in a better place for surgery.  Eden's goal for the week is to PEEEEEEEEE as much as possible.  I've never loved my child's pee pee so much!  In all other areas she is stable and we hope she can remain that way.  I have to admit that I am a little relieved to put the surgery off, but I also know that it has to happen and we can't wait too much longer.  Marcus and I decided that it's easier to have Eden in a "parked" position than to face the unknown with her operation.  Unfortunately, we have been told that this procedure is a "make it or break it" so we are very nervous.  I am constantly amazed by Eden though and I just can't count her out because she has proven to be the strongest person I know who has overcome so much already.  I have to believe that she will fight through yet again!

The experience today was another example to me that the Lord is in charge.  He provides a way even when we think there is no way that it can work out.  I am grateful that the Lord loves me and my little family enough to be concerned with our needs and I can't help but think that Eden was sent here to teach me a lesson or two.  Thank you all for your kind words of support and encouragement.  We love and appreciate you more than words can express.

We have taken the girls to see Eden quite a bit lately so I thought I would share some pictures.

My cutie pies being silly!

Can you see her foot sticking out the blanket?

Ainsley thought she needed to wear her "shades."

This is me and my girls with my sister, her husband and their three children.  These are all of Eden's cousins on my side.

We sure had a nice visit with Eden yesterday.  On Saturday evening they had an anesthesiologist come and put in a central line (IV) on the opposite shoulder from her Broviac that was replaced last week.  They can now give her more meds and she is now on a constant diuretic drip.  This is working some because she was negative yesterday finally.  Hopefully we can get some of her fluid off before her next surgery.  We will find out tomorrow after all of her doctors meet when she will have her operation for sure.  I am very confident in her abilities to pull through, as long as it is the Lord's will.  We are enjoying every minute we have with Eden right now and just basking in her peaceful spirit.

More to come on Tuesday!

We were amazed at how long it took to do her cardiac cath, but grateful that she is back and stable for the moment.  I wish I could tell everyone that Eden is doing better and that her cath went great, but unfortunately I can not.  Eden has been getting more and more sick the last couple of days.  They have increased all of her medications, her ventilator settings and her diuretics and she is just not responding.  She is also still retaining so much fluid that she looks like the dough boy.  Her catheter did reveal some interesting finding though.  I will mention the good things first.  They found out that her left ventricle is a good size and will try to keep it with her next surgery.  They also found out that the band they placed on her pulmonary artery during her first surgery still looks good and it's not really her heart causing her lung issues.  The dangerous news is that they discovered another narrowed section of her aorta.  This piece is where the aorta comes off the heart and is causing a very high pressure gradient in her heart and lungs.  All of her doctors say this explains exactly why she is so sick and can not get any better.  The very perplexing and mysterious thing is that this has never presented itself before now.  She has had other caths and so many x-rays and echocardiograms (ultrasounds) of her heart and they have never once seen it.  They also do not know how it happened or what could cause it.  bottom line is that the diameter of her aorta in that sections should be around 6 mms and hers is barely 4 mms.  This will have to be fixed surgically by patching that piece of aorta to make it larger.  This surgery is very risky as it is not done that often and mixed with her other problems, not good.  Her team of surgeons, yes they think that it will take all three of them to work on her at once, will have to repair her aorta, patch and close the two large holes in the middle of her heart and repair her mitral valve all in the same procedure.  Hence we go from high risk to EXTREMELY high risk.  They are also worried about how she will handle the operation because of her very sick lungs.  Waiting is not an option as she is getting worse so they said it will be in 7 to 10 days max.  The entire team of cardiologists and surgeons will meet again in Tuesday morning to discuss exactly when to schedule her.  At that point it is all in the Lord's hands.  I know that Eden is so strong and has proven to be such a fighter.  I pray that she has more left in her "reserves" that will amaze everyone.  I do believe in miracles and if anyone is deserving of one, it's my little hero Eden!  I have chosen not to post any recent photos as they are a little hard to look at.  Her hair is getting lighter and is not dark brown any more, it's more of a beautiful strawberry blonde.

I thank you all for your love, support and prayers.  I ask that you please pray for Eden this upcoming week that she will be strong.  Even if you do not pray for yourself, please pray for her that her surgeons will be guided as they work on her and that she can withstand the procedure.  We feel so blessed despite this trial and are forever thankful for wonderful families and friends. 

Eden is still really puffy despite being given extra diuretics.  Obviously, they would like her to pee out everything that goes in.  They call this being "even."  If she pees more than she takes in she is "negative" (rarely has happened) and if she pees less than she is given she is "positive."  Well, Eden has been positive by about 250 cc's every day which is substantial.  Another mystery they are trying to figure out with our princess.  We had a nice, long chat with one of her cardiologists yesterday who will be preforming her cath on Friday.  He says that Eden really is a challenge because she does things that babies just don't do, not even Down syndrome babies react as she does.  He spoke highly of her in that she is very tough and has bounced back from everything thrown her way.  However, he did say a couple of times that babies just are not meant to be in the ICU for months and months.  What does that mean?  Her nutrition is sub-par at this point since she can not tolerate any more than 20 calorie strength.  She should be at about 27-30 calorie strength for her age and size.  He says that they would term her "malnurished", but none of her blood work shows any signs of malnutrition at all.  Yet another mystery.  They are going to try infusing breast milk with her formula in very small amounts to see if she can tolerate it.  If so, they would prefer the breast milk because of it's immune properties.  I would love if she could handle my milk.  The worst thing happened this morning when we received a phone call that her broviac line had just come loose.  If you remember, she went into surgery almost 2 months ago to have a more permanent IV central line placed for all of her medicines and blood draws.  This was supposed to last her until after her next surgery.  Well, it came loose somehow and she had to go back into surgery today to have another one placed.  She did well, we expect nothing less than for Eden to handle it well, and she is not recovering.  This seems to get harder every day for me.  I am thankful that Eden is just a baby an will hopefully never remember anything when it's all over.

Thank you all for supporting our family and for helping me feel the Lord's love through all of this.  Despite the challenge this is for us, we are so blessed.

I probably should not be as upset about the move as I am, but we had no idea of their thoughts to move her.  I did find a voice mail on my cell after the fact telling us her new room.  The real issue for me is that she will now have all new nurses and intensivist doctors.  We all know that Eden has not been very easy to figure out and don't want to go through the learning curve again.  I was also very comfortable in our old surroundings and it was nice to know the staff and other families and I guess it helped me to cope knowing that I could chat with familiar faces.  The real kicker is that Eden will go back to the cardiac PICU after her cath on Friday, so we uprooted and moved for 6 days!  Just venting I guess.  The bottom line is that we have to do what is best for Eden and if there are other babies who are more sick than  her, I understand.  We've just had too many experiences with her doing good and then taking a turn for the worst. It scares me that since we've had an uneventful week, she will change it up next week and it won't be pretty.

Eden is still doing well on her feeds, as long as they don't mess with or increase her 20 calories per serving.  She remains on 20 cc's an hour of 20 calorie formula and no diarrhea.  She is still really puffy so they have changed her diuretic to see if that helps.  They really wanted to put her on a diuretic IV drip on Friday to get the fluid off, however every time they tried to get an IV in, her vein would blow.  She has been poked so many times she doesn't have any available veins right now.  Poor little girl!  She loves to have her CD's playing and she LOVES to swaddled tight.  It's so cute because her whole body will be wrapped tight and she always has one of her little feet sticking out for some fresh air.  I will have to snap a picture of it!  Her chest x-rays that look at her lungs are getting a little better and her respiration rate is better than it's ever been.  I sure hope she can get her lungs healed.  Her doctors always say that she just needs time to get bigger and for her lungs to heal so she can once again breath on her own.

Juggling the hospital and our already busy life seems to take a toll at times.  I honestly don't know how I fit it all in an certain days and then I wonder why I'm so tired.  I am so so thankful that my mom and my mother-in-law are willing to take shifts at the hospital or watch the other two.  I don't know what I would do without the two of them.  I don't know what I'd do without all the support we have received from so many friends and family.  Thank you all for "being clutch players."  I can't tell you how many times I've called a friend at the last minute for a favor and they are always more than willing to help.  What a blessing you all are in my life.  Thanks! 

We took a little get away to the Grand Canyon

Now for my news on my little Eden.  She is still puffy (when will it ever go down fully?).  They say some babies just hold onto their fluid for a long time, that is our Eden.  She is up to 20cc's an hour of 20 calorie formula.  They tried to increase the calories per serving of her formula yesterday and she did not handle it well at all.  Her belly got very distended and she spiked a fever so they went back down.  They really would like to get her calories per serving up so they don't have to supplement her with lipids (a form of fats) through IV.  It just might not happen though as she has trouble any time they do this.  She has stayed the same with her ventilator settings and we are now beginning the talks about a trach.  She is going to have another cardiac cath done next Friday to check her heart function and after that her doctors will decide when they need to do her next surgery, which one they will do, and when to do the trach.  If she has to have surgery right away, they will wait and trach her after.  However, if surgery can wait another 4-5 weeks, they will do the trach now so it can heal before surgery.  I don't think any parent wants to talk about putting a trach in their baby, but we are told by all of her care givers that it will be better for her.  It is easier to manage, it is a stable airway, whereas a vent tube is not, her mouth and face are free for a binky or whatever and it is much more comfortable for her.  It would only be in as long as needed and in the long run it does not affect her vocal chords or any thing.  The best thing is that she can come home (when that day comes) on a trach.  I hated the idea at first, but the more I talk about it I like it.  I hate to see her so uncomfortable and if she would like this better, I have to do it for her.  From now until next Friday is going to be just a holding time until the cath is complete.

Marcus and I are so thankful for all of you.  I say this all the time, but I can't express my thanks enough.  Believe it or not, I have not cooked a meal in 11 weeks.  The wonderful friends from our ward at church have brought a delicious, hot dinner every night.  Your loving service continues to touch and uplift me.  I only hope I can be such an example of true service.  Thank you!

You can see just what a marshmallow she is.

I think her wound looks much better than last week, don't you?

It was my happy mother's day spending some time with Eden.

We love to hold hands and chat.

Eden is our little puff ball lately as she just can't seem to get rid of the fluid retention.  They don't know why she won't let it go.  As you can see in the pictures, she seems to arch her head back and they think it's because her neck and "jowls" are so swollen.  She is still on the ventilator, but they have decreased her settings a bit.  They are also feeding her again through her NG tube (the tube in the nose.)  She is on a formula called Progestimil, which is lactose free and even easier to digest than breast milk.  It is partially digested so all of the proteins are broken down already.  We will hopefully get to mommy's milk some day.  I think that all of her doctors would like to see her lungs improve a little and they are going to lay low this week to see if she can improve.  Surgery is right around the corner we just don't know exactly when.  If they have to do the trach, that becomes a whole other issue.  It's so difficult at times because I love to have everything scheduled exactly and with Eden it is really day to day.  I hate not knowing a sure plan of attack.  We have to let Eden dictate the pace and obviously she like to take her time.  Her surgeon feels that she is still trying to recover from the horrible blood infection she had around Easter.  He said those are very dangerous and take so much out of these little babies.  She continues to amaze me every day with her strength and determination to pull through.  I hope this will serve her will in the future.

Happy Mother's Day to all of the mommies out there.  Being a mother is one of the hardest things I have ever done, but it is also more rewarding than anything else in my life.  

I am thankful for Ainsley because she taught me how to be a mother.  She teaches me every day how to love without end and her beautiful smile is contagious.  She is my princess!

My sweet Emerson taught me how to be an advocate for my children.  She shows me on a daily basis how to love others without boundaries and how to LOVE life.  She is my miracle.

I love my Eden because she taught me the deepest of loves, that only  mother knows.  I am humbled by the spirit that adorns her and the peace she brings to all that meet her.  She is my saving grace.

I love being a mother!

Thank you to all of the mothers who are such stellar examples to me of what I can become.  Thank you to my own mother who I will forever believe is the greatest mother that anyone could ever have.  I am so blessed!

I am so proud of Eden because she has proven to be a fighter once again.  She has rebounded slightly from her sick spell and is looking a little better.  I say a little because her vent settings are still high and she does have an infection in her ET Tube (her ventilator tube), but they are treating it and we hope it will pass quickly.  She is also still having diarrhea, however they started feeding her again because she was having it with or without the food.  They think it's due to all of the antibiotics in her tummy.  Her sternal wound looks better and hopefully will heal up well now.  All in all, she is in a better place and I enjoyed holding her today and feeling her skin against me.  I just sat and kissed her little hand over and over with I rocked her.

Dr. Pearl had us come in this morning to meet with him and discuss the "game plan."  He said that her lung issues should not be due to her heart function, or at least all of the tests give that indication.  They would like to give her one more try to get down on her vent settings and either attempt extubation or get her to a better, more stable breathing place.  He also still believes that her heart is functioning exactly as it should be prior to surgery.  All of her issues remain a bit of a mystery.  None of the cardiologists, surgeons or intensivists want to do surgery right now because they are not very confident in her ability to withstand such a big procedure.  She is still so compromised.  Dr. pearl would like to get her healthier and stronger and then do surgery in about 3-4 weeks.  He also mentioned putting in a trach if she does not get any better on her ventilator settings.  They can stay in longer, are easier to manage and more comfortable for the baby.  I do not want to go that route, but we will do whatever is best for Eden.  He also reminded us that her next surgery is very, very high risk and we will have to prepare ourselves that she may not make it out of the OR.  I knew that in the back of my mind, but having him say it to me today was a reality check for sure.  I know that my Eden is so strong and she will fight her very best.  I also know that we have seen miracles with her little life and I believe that more will happen.

Please continue to pray for Eden that the Lord's plan will work in her life.  I truly believe that the Lord has a plan for Eden and our family and it will be for our good.  The Lord has blessed me so abundantly and I cherish Eden and this time with her as one of the greatest blessings in my life.  I have to thank all of you again for your love, support, prayers and kindness.  It is so humbling to be the recipients of so much wonderful service.  May the Lord bless you for your good works!  We thank you and love you.

Beware: these photos are not for the faint of heart.

My sweet Eden's incision is now a wound that is hard to heal.

As you can see, she just didn't have enough skin to close it up after the infection scraping.

However, this morning we received one of the infamous "phone calls."  Dr. Bakerman, Eden's intensivist called to say that Eden has gotten worse and is getting sicker.  At this point they do not know why she is taking a downward slide.  They have sent in a number of cultures to see if she has an infection, but everything has come back negative.   I should explain a little better, by "getting sicker" I mean that they have had to substantially increase her ventilator settings, give her more medications "drugs" and put her on a continuous diuretic drip because she swelled up badly.  She is still not getting any food as she continues to have a little diarrhea.  They were thinking to start a new formula tomorrow (they still don't think she can do breastmilk...and I have SOOOO much!), but after today they might hold off.  She has had a slight fever on and off since later yesterday afternoon, but again with nothing conclusive.

Now for the surgery issues.  None of her doctors want to rush into surgery for many reasons.    For one, her incision has still not healed very well and continues to look like a flesh wound.  That could be a prime spot for an infection to enter during surgery.  Also, they would like to see her breathing better on her own before attempting surgery.  She is also quite puffy and it is not good to go into surgery with fluid retention.  The bottom line however, is that they do not have complete confidence that Eden will make it through another MAJOR heart surgery right now.  They question if she could come off the bypass machine and if she has the reserves to survive.  They said that they would be more prone to do surgery right away if they thought it would make a marked improvement for Eden, but sadly enough they aren't sure if she will be any better after this surgery.  No one knows if it will really repair her heart well enough to sustain her.

It has taken me nine weeks to better come to terms with the fact that it is completely out of my control and the Lord is in charge.  I have seen the Lord's hand in my life countless times, all for my good, so I have to have faith that this experience will also be for my benefit.  I can not deny that He has a plan for me and my family.  I just have to use all of my faith at a time like this.  These are the experiences that can make me a better person and strengthen my faith.  I am thankful that the Lord loves me enough to surround me with wonderful friends and family who love, support and pray for Eden.  Thank you all and please continue to strengthen her with your prayers.

Eden latched onto Ainsley's finger right away.

We took the girls to see Eden for the first time since before her surgery two months ago and it was a joyful reunion. They loved looking at her and touching her and Emerson made sure that we were all very quiet by shooshing us every second. As we are still very unsure of Eden's future, I don't know if it was a good idea or not for them to see her again and rekindle those feelings. For the moment though, it was my family all together and I was one proud mommy! I wish I could tell you that Eden is making progress and getting better, but she is not. To be quite blunt, Eden is still very sick and we were told today by her intensivist that another surgery could be 7-10 days away and it will be a "very risky" operation at best. Everyone still hopes we can keep both of her ventricles, but Dr. Pearl really won't know until he begins operating and even then, it might not become apparent until after surgery whether the correct decision was made. I find Dr. Pearl to be a very optimist doctor, but even he says that it could be a "go for broke" surgery. The real question now is whether or not her little body, lungs and heart can withstand another major operation and what will her heart function be after surgery. I try to remain positive, but we were so unprepared for the gravity of her heart defect and the course we are now charting. They have stopped her feeds again because she has more diarrhea. She just can't tolerate the volume they would like to give her so she is back to IV food. As was the case a month ago, they will meet on Monday morning and discuss Eden and what to do with her. I get so scared thinking of her going back into surgery so sick, but I also think that maybe this is the only answer for her to have a chance at getting better.

We are amazed at the little blessings we see in our lives daily. I have learned more from Eden than I ever imagined and all without her saying a word. Please continue to pray for Eden and those that care for her that the Lord's will be done. Thank you for your faith and prayers and for loving and caring for our family. Your strength gives me strength when I think I can't go on. We love you and thank you.